Overdue update, & encountering cancer

This is largely what I saw the first time I encountered cancer:

I was wearing this absurdly cheerful polka-dot skirt the day I went for my biopsy results and was informed I had a Stage 2, Grade 2 breast cancer.  I was looking at my lap, my feet, the sterile linoleum floor, trying not to throw up–shocked and strangely interested in the intense sickness I felt, the visceral nature of my response.

Contrary to appearances–as well as what I said here–I am not, after all, planning on discontinuing the writing of this blog.

Firstly, I’ve been waylaid in my attentiveness to the project of posting the journal entries from my treatment, having reached no satisfying conclusion to this narrative.

But secondly, and more to the point, there is no satisfying conclusion to this narrative. In April I said, “I am anxiously awaiting the day when I stop writing about cancer entirely” — that “I do not want write this blog any longer. Or, not until the next time I encounter cancer, which I can only hope will be never.”

Yet I am constantly encountering cancer. It would be hopelessly naive of me to believe I could rid this from my life entirely, and move swiftly on to considering only 19th century American literature, as if returning from some awful Oz.

I’ve moved to Michigan now, and am in the dreadful process of trying to transfer my treatment to the University of Michigan Cancer Center. I say “process,” but in actuality I have reached a seeming impossible impasse with them, as I cannot get in touch with the hospital in London to locate slides and films which may longer exist in the first place. They will not admit me as a patient without them. So, right now, I am nobody’s patient. In a way I like the feeling of that–no hospitals on the horizon–except that constant patient-status for the rest of my life is absolutely essential.

Further to the persistent problem of pelvic pain, I had an ultrasound awhile ago (I didn’t realize until I got into the examining room that this was a transvaginal ultrasound, all in all a rather absurd procedure wherein they put a lubricated condom on a big fat wand and basically, well, fuck you with it). Last week I got a call from the physician’s assistant reporting no major abnormalities, but the gynecologist advised a uterine biopsy to rule out the possibility of the uterine cancer which could be a side effect of Tamoxifen.

I declined the invitation, as attractive as it sounded. I absolutely cannot deal with the thought of a biopsy right now. Moreover, the whole idea is rendered completely hypothetical, as I DON”T HAVE ANY DOCTORS HERE.

Back on the subject of the polka-dot skirt: I’ve had a kind of superstition about that skirt since; I can’t look at it without hearing “cancer,” hearing it applied to me. But I wore it today to the orientation meeting for my Ph.D. I’m terrified of this undertaking now, in the wake of the way the chemo ravaged my brain–the terrible problems with memory and concentration and articulation it’s left me with, which don’t lend at all well to a doctoral degree in literature. But this is what I mean–I encounter cancer & its consequences constantly.

We’re stuck with one another here, it seems.

10 August 2009: Choice

Terrible foreboding and loneliness. The two of us in this house together and nothing but discomfort between us. I wish I could feel warmth, comfort, closeness. All outward signs are there: he takes me to the hospital, makes my meals, says he wants to “be there” for me. The essential difference, it seems to me–being “there for” me versus being “there with” me. Wanting to be with me–not as a fulfillment of some duty, some cause of martyrdom.

And I’m anxious and defensive, bitter and easily upset. Recovering from the biopsy, the awful pain and ache and itch of the stitches and bandages. I don’t know how I can possibly cope with the “real” surgery when this small thing unnerves me so.

Spent yesterday restless–alternately working my way through Shakespeare’s comedies and nodding off to sleep. I sleep so easily these days, so often, so suddenly and so long, a series of deaths.

I spent more time trawling the internet for cancer-related websites, watched a woman’s hair regrow in time lapse from chemo–still no idea what is happening with my own. The search term “mastectomy support” yielded mostly information related to lingerie and swimsuits. “You may feel an essential part of your femininity is missing”–why femininity, merely, specifically? Why always the emphasis on gender or sexuality when it is an organ too, and aesthetically, functionally, a part of oneself, and not only one’s sexual self? The comfort is meant to be that, externally, socially, “no one will know.” That you can cover up your cancer, your surgery scars, like the most shameful parts of yourself. As Audre Lorde claims, a near-conspiracy to hide these women, make us indistinguishable to one another. And the emphasis placed not on prevention or recovery or cure but on reconstruction–to be attractive to men.

I’m ashamed by my inability to cope, sickened by my own appearance. How do you make a change in your essential attitude to and response to adversity? Is a change of such magnitude even possible? I don’t know how you start but by pretending, and hoping that your invented persona takes over. It’s the only way to execute a choice over your attitude. My response to most things in the hospital has been utter despair, bursting into tears. To not do that would be to actively deny my natural response–and hope that enough instances of ‘acting’ calm would eventually translate into ‘being’ calm.

But still I am on this course I have not chartered, and over which I have no choice. Or else, the only choice is to allow myself to die, which is no choice.

2 August 2009: 31,000 feet

Taking off from Cleveland as the red sun dips in the sky. From the air the network of streets and trees, ponds and houses seems delicate and deliberate. So many blue swimming pools.

My hair is falling out again. To distract myself I try to count the number of round trips I’ve made across the Atlantic–Oxford, Munich. Christmases, P’s funeral.

The route from Cleveland crosses Lakes Erie and Ontario, Quebec, the Atlantic Ocean, Ireland. And ‘home.’

Sentinel node biopsy on the 6th, Thursday. Mastectomy 8 days later, the 14th, a Friday. None of this is right, to write these words. To feel the lump, to say, to think, ‘cancer.’ I hate the sight of myself in that bathroom mirror, in front of which I’d pinch myself, a decade ago, wanting to be as thin as the models in Seventeen. Now sickened again by my soft white flesh, my patchy fuzzy head, my small and temporary breast.

We’re following the shoreline. The altitude and sunset render everything out of focus. It’s a wash of colour like a Rothko canvas and the moon looms clearly but for one fuzzed edge, mysterious, out of place.

I look down and see the unmistakable shape of Presque Isle, realize we are flying right over Erie, right over my home. Remember looking longingly at jet trails from the backyard as a child and wishing I were on ‘that plane,’ wherever it was going. And now, how much I’d give to feel safe, not to have to be doing this. A mix of dread and denial.

31,000 feet. Turbulence expected. The lake beneath. Near Buffalo, where I was born a quarter century ago.

This feeling like nothing I’ve ever experienced. Terrible fear and no way to prepare. R. says whatever is in your mind is worse than the actual experience will be. What does she know? She had a small lump removed, and it was benign.

I am sick in so many ways. The cancer, and the sickness of the chemotherapy. Of ineffectual treatment. Most recently of a virus, a sore throat and runny nose and nausea. And the terror, and the terrible malaise.

K. on the other side of the ocean. A comfort, but not to keep. A terrible loneliness is mine instead.

16 July 2009: the same sad, sick self

My brain’s still operating strangely, slowly, a sluggard of drugs. Three o’clock in the afternoon, having only just really begun the day. Tea and Scrabble with H. earlier, feeling strange and anxious all the time.

Last night—the experience of seeing a double rainbow arc perfectly across Oxfordshire. A strange electric sky—and myself uncomfortable and drugged in the middle of it.

And always saying well, I suppose there is tomorrow.

This incredible sense of panic now, near-hyperventilating with having half-allowed my mother to book a flight for my return. Eventually I will have to do it, admit that America is there, my blank accidental future too, that everything I’ve ignored all this time still exists as profoundly. I try to convince myself it will be “good to” be home, to “sort things out”—but truthfully I want to see no one; I want to hide here.

How adolescent it all sounds. But this terrible sense of foreboding overwhelms—a dreadful, panicked, powerless feeling in which everything sinks in: the cancer, the lack of prospects, the dim grim end of our love.

Today on the train the air felt electric with waiting rain. A peculiar light in which even the Didcot power station appears majestic. The woman beside me wore a polka-dot dress and crossed her thin ankles on the seat opposite. I thought: how I would like to be reading these stupid journals in twenty-five years time, with all their desperate insistence on considering mortality, on feeling helpless in and worthless to the world, and to know that even this was a phase as everything else was, and that I did what I cannot even fathom now: live through it.

L. wondered whether four months since receiving a diagnosis had been enough time to “process” the reality. I don’t know—have not considered it. My first thought, nearly, on learning I had cancer was that I am not the “kind of” person who can handle it—believing that my inability to cope with it somehow made me immune to it. But nothing changes, not really—what, after all, is the “reality” of a disease you can’t see? So I have chemo and get sick and my hair falls out like in the movies and that becomes normality to me. I felt a rush of sadness this morning thinking how lovely it would be to be in my London flat today and feel some ownership over my own life—but I am not in mourning for it. What should I mourn for but the loss of myself—or, will I get to the point at which I do not realize I am already gone?

God, the uncertainty of the other side of the Atlantic—all the pain in between. My impossible love. I am so sorry for everything.

A series of countdowns now. 10 days til home; on return, 3 days til biopsy, then 8 til surgery.

In the bath I look down at my complete, living body and want to scream with rage and pain.

Thinking about the sadness of hometowns, unearthing old loves. I don’t want everyone else to go glibly on with their own existences while I falter and flounder. I was always so far ahead…

Did any of the rest of my life actually happen? Because I seem to have been deposited here without any point of reference.

I have been constantly waiting on the world to offer me something.

I am terrified of stretching to what would seem to be the outer reaches of my ability and finding nothing to draw on. Which explains to paucity of my production.

Usually I grow bored with blank notebooks, buy a new one in an attempt to strike out upon some more significant course and catalogue it. Now I’m faced with an insignificant ending, and a new notebook readily assigned with the symbolic pressure to be meaningful.

But tomorrow is just another Friday
And I am still the same sad, sick self

15 July 2009: the Lord preserves the young ones

The sick cloud of the final chemo—I can hardly write or fathom the date. Barely able to function in this sick, spinning state. Unable to speak coherently to my mother—having caught me in the library, demanding a date to book my return—a suggestion I mooted yesterday as an alternative to my father’s coming here for my surgery, but now I’m unsure as to whether it is an entirely coherent idea and cannot be asked to consider it now. Everything is overwhelming.

Last night: sitting by an open window with lotioned feet, alone, reading de Beauvoir’s Memoirs of a Dutiful Daughter. A brown-red leaf had blown in through the window—made me feel alive and sad.

Yesterday I stumbled across Toru Dutt’s The Diary of Mademoiselle d’Arvers in the Wantage Public Library. Strange and fascinating, this young and sadly fated Indian woman writing French, her character’s deep and desperate fear of death, the clinging to conjectured concepts of marital and maternal love—and the author herself dead of consumption at twenty-one. Everything in the book clings to youth as salvation, yet admits the futility of such thinking.

“I have great faith in youth,” the doctor says—

but Marguerite’s frightful prophetic dreams; the recurring song, the buried bride—all that Ophelia-like sad youth and chastity—and her pathetic question: “The Lord preserves the young ones: he will preserve me, won’t he, my friend?”

All the time having known, from her dream of her husband with “the face of Death,” that “When the trees will flower again, I will no longer be there; I will be lying under the cold grass.”

The Epilogue sadly woven with Psalm CXVI:

I love the Lord, because he has heard
my voice and my supplications.
Because he inclined his ear to me,
therefore I will call on him as long as I live.
The snares of death encompass me;
The pangs of Sheol laid hold on me;
I suffered disress and anguish.
Then I called on the name of the Lord:
‘O Lord, I beseech thee, save my life!’

Gracious is the Lord, and righteous;
our God is merciful.
The Lord preserves the simple;
When I was brought low, he saved me.
Return, O my Soul, to your rest;
for the Lord has dealt bountifully with you.
For thou hast delivered my soul from death,
my eyes from tears,
my feet from stumbling;
I walk before the Lord
in the land of the living…

—& how cruel to have this, a supplication against her own fate. And for me to read it, somehow still believing in the sanctity of youth and its preservation, that beseeching for lifesaving is so tempting—

I walk before the Lord
in the land of the living

13 July 2009: Insomnia

2 AM—steroid insomnia
Or insomnia of another sort of course
Statistics & mastectomy pictures
Reconstruction, Tamoxifen, Michigan
Bankruptcy, relationship, religion,
Jack the Ripper, gender/secondary sex characteristics,
the Bodleian, Haworth, Wuthering Heights,
Simone de Beauvoir, ‘writer’s block,’ the emptiness,
Mastectomy, my imaginary children
Chemo in the morning
Dr S—what to say?
The emptiness—the horror
Etc.

 This is the hour when you notice clocks ticking, clocks you can’t find. Inevitably I wake him, fumbling for my glasses and bathrobe. He sits up, flustered, and says my name. I confirm. “Are you ok?” he asks. How can I possibly answer that? I will always be against this disease, afraid of my body. Will I ever be “ok” again, then?

My computer, that suggestion of connections, short circuits as per usual. I sit at the kitchen table and drink a glass of water. Consider the impossibility of Erie Pennsylvania.

 For moments I believe I could go home—sell coffee, build bookshelves, learn German. And then I imagine them dredging my body from the Thames; I am unable to cope with the slightest inconveniences of living. Why can’t I just behave like that quintessential quasi-sick-in-the-head cancer patient, celebrating sunlight and buttered toast,  ‘embracing’ the previously-ignored minutiae of existence? I’d like to believe I am too bright to be seduced by the perverse propaganda of this disease, but perhaps I am just not brave enough to live in any instance, under any circumstances.

My children are—have always been; I remember sketching their future existences as an eleven-year old—so real to me that to ever know I could not have them, could not raise them, watch them become people, I surely could not bear to live. So I continue to hope for that sake, unable to bear the consequences of the alternative. I do not want to live solely for myself. I believe I would be a good parent—God, I already love the thought of them more than my own stupid life.

I am so ashamedly cruel to wish cancer on almost everyone I see, but who, really, would not think of a stranger: better you than me?

Three AM. The unbearable certainty of going to lie beside my lover and stare fitfully into the empty space where the ceiling is. My body unable to regulate its temperature. Half-sleep somewhere near dawn, perhaps punctuated by nightmares. And the awful familiarity of what the morning has in store. It could be worse, of course—I think all the time of what could be worse. And it is precisely thinking of all that is worse in the world that undermines my faith and hope in my own insignificant recovery. Better people, younger people, people with more “promise” and “everything to live for”—what right have I to pray for my own uncertain future when a whole world of brilliant people die and have died in wars and ovens and accidents and other acts of inexplicable tragedy?

K. is haunted by the recent suicide of a former colleague from St. P’s—that college has, it seems, an extraordinary rate of tragic deaths among young alumni, or perhaps I am naïve to the preponderance of tragic young deaths in the world. First there was J, who drowned in India, then L who fell to her death in a climbing accident. Now A, on the verge of an enquiry from his employer about misuse of company resources, losing his job or perhaps prison, puts on his best suit, has an expensive meal in some London restaurant, champagne etc, then jumps eight floors.

Two weeks ago a woman jumped from the Carfax Tower. Money trouble, apparently—the headline something like CREDIT CRUNCH KILLS. And traumatizes crowds on Cornmarket Street, no doubt. How unthinkably sad and selfish.

And it troubles me, when I would so like to live.

23 June 2009: a cry for connection

Awash again with chemo after Dr. S’s U-turn in treatment (a standoff in his office yesterday, his defensiveness and awkwardness and my ever-present frustration and anger)–decision to go ahead with the final two chemo treatments with a view to mastectomy in early August. An awful six days that led up to this: quarrelling with K., bad sex, wanting to distract myself, desperate for intimacy and left ultimately with more and more evenings crying into pillows pathetically. Frustrated that all of this heartache and uncertainty could have been avoided with a little clarity and concern from the hospital. A biopsy date’s still undecided; more and more of this last-minute news. Like the biopsy’s done under general anesthetic and requires an overnight hospital stay. By the way. But what else to do but plug on with the meantime?

I’ve just read Sontag’s early journals–her intensity, beauty, brilliance–at that age, having so surpassed me intellectually/professionally/in experience, in range and depth and meaning of experience. I do wish I were allowed more access to her mind in them–that the journalling were not so fragmentary.

She says:
“In the journal I do not express myself more openly than I could to any person; I create myself…it does not simply record my actual, daily life but rather–in many cases–offers an alternative to it.”
+
“The writer is in love with himself…and makes his books out of that meeting and that violence.”
+
“To write you have to allow yourself to be the person that you don’t want to be (of all the people that you are).”

I’ve ordered Illness as Metaphor — an egotistical interest, I guess, in the meanings of my own illness (or lack of menaing). Like the search for & disappointment with Sedgwick’s book–a cry for connection.

In the waiting room yesterday, reread Virginia Woolf’s On Being Ill:

“All day, all night the body intervenes; blunts or sharpens, colours or discolours, turns to wax in the warmth of June, hardens to tallow in the murk of February. The creature within can only gaze through the pane–smudged or rosy; it cannot separate off from the body like the sheath of a knife or the pod of a pea for a single instant; it must go through the whole unending procession of changes, heat and cold, comforting and discomfort, hunger and satisfaction, health and illness, until there comes the inevitable catastrophe; the body smashes itself to smithereens, and the soul (it is said) escapes. But of all this daily drama of the body there is no record.”

–pre-empting, perhaps, all the piss and shit in modernism.

I see myself this way: as gazing through the pane/pain of the body. Even as my hand cramps here. It’s something I have always found difficult to imagine about writers, prose writers particularly–how they manage to sit there, inside themselves, and produce–how many times distracted by this restlessness I always seem to have? By hunger and malaise and lethargy and the body’s desire to move, pace, ignore the dreadful submission to the immobile mind…

18 June 2009: the worst possible outcome

I had prepared myself for the worst possible news but still not quite expected it–mastectomy, or a waiting list for one at least. A terrible uncertainty, weeks or months of waiting for worse news. For the moment, waititing to see the Oz-like Dr. S. on Monday, who cancelled last week’s chemo without a word to the surgeon, then upom speaking with her apparently agreed to sanction one or two more sessions of Taxotere while I wait for the mastectomy. I over overloaded with information from the surgeon that I’d expected I should have known before choosing to begin chemo–for instance, that a lumpectomy was never actually a viable option, with a 50% chance of local recurrence in a lifetime. Also, that they cannot know whether the cancer has spread to my lymph nodes until surgery. So I must wait for an appointment for a sentinel node biopsy–which isn’t even necessarily accurate–and an additional week for its results. And I cannot even begin to allow myself to imagine the worst possible outcome for that, even at the disastrous course I’ve already set.

Alternating disbelief and bitterness. I cannot concentrate on anything–anger and self-pity and ugliness. Unable to plan for, focus on, commit to anything–not with all this doubt and fear and ignorance and uncertainty surrounding me. If I felt I were recovering–but will I ever feel I am recovering, or constantly fear its ugly, dreadful presence in me?

I was bald then, too.

 

        

30 May 2009: the Disease

Tired of The Disease’s distasteful interruption to my life. A coping mechanism, I suppose, to view it as a nuisance. Trying to quell the terror of the possibility of this new drug’s being just as ineffective as the last was. Nothing to do but wait–for that date, the next appointment, 17 June. I’m restless, uneasy; I don’t know how to approach the time til then. Yet I don’t have to “approach” it at all, I suppose–it will approach me, overtake me, as swiftly as the rest of it has.

I’m desperate to stay in the warmth of this moment, this memory, and without all the underlying anxiety–a still, hot Saturday with my bare feet in the garden grass–how could something like surgery, like death, be as real as this?

Mostly it’s the wistfulness of wishing this were ‘really’ my home, my life, that I could be cemented into it somehow without the feeling of wandering wraith-like through other people’s lives, the ghostly uncomfortableness knowing none of this belongs to me, nor do I deserve it.

My father has boked a ticket–four days I’ll see him, after an absence of years. His voice on the phone is tinged with desperation and worry. Both of us helpless, not knowing what to say to one another. The strange, enduring, inarticulate & inexplicable love.

I continue to exist with my imagined life of the mind while my real world recedes, its borders drawn in. I imagine expansion, and how wonderful it would be to have the money and ability to travel, as if, should I go far enough–or far enough away from my daily reality–I might be able to escape it.

How disgusting that news of more chemo would be a blessing. God, I am terrified of going into that room in two and a half weeks and being met with that assortment of chalk-eyed people.

I’ve become accustomed–appointments, pill-taking, exhaustion. The latest nurse who prodded my arms after asked, “How was the cannulation?”

“Great,”I said, and meant it. A relief not to have needed multiple needle pricks, to the point at which it was almost a pleasure. I’m at the point of becoming another one of those doe-eyed women in the ward, bored but unfazed by it all, allowing it to happen because there’s not other choice–realizing your own powerlessness, your insignificance in the system.

And I’d be happy with that, too, truly–all of the hospital bullshit–could I be assured this treatment were treating the disease. I wish I could perceive a difference, not constantly feel it, hard as a peach pit, cruel and unmoving.

If there is no just reason for having gotten cancer in the first place, is there any just reason I should recover without pain or even inconvenience? Most of me refutes entirely the possibility of a mastectomy at twenty-four–but what force will prevent it, not having protected me in the first place? (I cringe at my blasphemy–but it isn’t exactly a doubt of God, but rather the realization that any sort of Calvinistic predestination is not under my direction or at my discretion).

I get embittered by old women. Walking to East Hendred this morning I momentarily hated her, a grey-haired stranger in an overcoat, hands clasping Cadbury’s chocoaltes in their purple metallic wrappers. An overcoat! What right had she, I wondered, to live so long? And of course I was immediately ashamed of myself; God knows what she’s been through. What kind of discretion dictates existence? What sort of sick insistent logic might I apply?

Apocolyptic dreams last night, blood-red streets and starvation. Something about a cult concerning Jade Goody. And Anne Frank preparing to hide in an attic.

Waking knowing what the end would be; feeling cheated.